I'm BaCk❕

It's been a while (about 2 years) since I've written a post and I'm sorry to all my readers for that! I've been through a whole lot since my last blog post and to sum some things up, I hope in this post I can share what some of those things are!!

I moved out of New Jersey/Philadelphia area and am now back in New York! Everything that brought me to the Philadelphia hospital soon began to come to an end. The doctors and nurses that I trusted so much and that I felt were like a family, apparently did not feel the same way about me as I thought. Their frustrations with their inability to understand and address the reasons why my disease is so progressed led them to begin to question me! For some reasons as many of you know, my hospitalizations last for months on time but they began to push for my discharge days into my admittance into the hospital. Why? Because they wanted to get rid of me as soon as they could regardless of whether I was still in pain. I remember begging a doctor to let me stay once because I was in so much pain and I was scared to go home in that much pain. No matter how much I pleaded and tried to be an advocate for myself it all fell on dead ears. I tried talking to the pain specialist that I trusted so much but that too was a dead end. Huh. I felt so alone. At that moment in time I had been away from New York--my most familiar place. No contact for years at this point from my NY friends, I was living in NJ/Philly area where I knew no one and was too sick to get to make new friends so all I had was my family.

As you imagine what my emotions must have been like, now try to understand why I felt so alone and even more isolated and frustrated when the doctors and nurses I trusted and thought understood my situation began to question everything about me. Looking into the eyes of the person you trust only to get challenged, and doubted about being sick was hell. On my last admittance into Thomas Jefferson University Hospital (TJUH) they actually asked security to escort me out of the hospital. A result of my telling them that they can't discharge me when I'm still in pain! They didn't agree.

I only moved to the NJ/Philly area because I wanted to go to TJUH since the sickle cell program at Montefiore that I was going to, closed down (and at a point when my disease took such a drastic turn)! So once they kicked me out of TJUH I had no reason to stay and so I moved back to NY!

Coming back to NY has been a difficult undertaking. I've gone from hospital to hospital in search for my new home (hospital). It finally led me to Columbia Presbyterian or New York Presbyterian (NYP). At NYP it was very interesting outcome of how my first doctors appointment went. It was a normal visit, talking about what has been going on with my health all these years, the Bone Marrow Transplant (BMT) I had five years ago, transfusions and exchange transfusions I've had, migraines, surgeries I've had, my Fibromyalgia etc. We talked through it all and the doctor all of a sudden suggested that because of the severity my illness it isn't a bad idea to think about doing another Bone Marrow Transplant and that he would write a referral and I should see how it go! I didn't give it much thought because my last transplant failed and where would I get another donor? I figured my mother and I would just meet with the Doctor to see what he would say, thinking that probably nothing much would come of it. Upon going to see the BMT Doctor all of a sudden a stream or a team of people came into the room to talk about 5 or 6 in total, all focused on me. Well, they talked as though they were going to do the transplant. I thought they would review or question whether or not I was qualified to do another transplant but they said they would do it and it was possible with the same donor I had in the last transplant. They talked about how much things have changed in five years and that there is an anti-rejection drug I can take in precaution, in addition to other things that can take place. I signed consent papers to get all my information from the hospital I did my last transplant. I made other appointments with the BMT team so we can continue on with the next steps. All those appointments have led to this moment. I'm only a week away from doing the transplant. There's only one condition! That the last test before the transplant clears me into being able to have the BMT. My appointment with a liver specialist is this Wednesday. So please pray for me everyone! I truly need your prayers that everything is okay with my liver and that there will be nothing that keeps me from being able to have the transplant. Please pray that my life can finally begin as a result of this transplant--that I can be cured of this debilitating disease that has only brought me pain, sorrow, isolation, and has mostly brought doubt and questioning of the truth of my pain by doctors and nurses all my life.

Everyone this is my chance! My last chance. Please pray!